Taken away as an infant and placed for adoption, Jen Stein was afraid that knowing nothing about her Native American past or potential hereditary diseases could put her and her children’s health at risk.
So, like millions of people around the world, she bought a home DNA test kit to find out her health profile and ancestry – a growing market dominated by companies 23andMe and Ancestry.
The simple, saliva-based test, which costs about $100, changed her life and led to Stein finally reuniting with her long-lost biological mother.
“My girls and I feel like we know more about why we are the way we are, and who we are. It’s made a huge impact,” the 41-year-old said in a phone interview from Washington state.
The number of people who have had their DNA analysed by the consumer-testing companies has taken off since 2016 and now stands at nearly 17 million, according to science website DNAGeeks.com.
By 2021, the website estimates, that figure could be more than 100 million.
“People in part use DNA tests to base their identity, to give them some assurance for certain things and where they came from,” said DNA scientist Yaniv Erlich, who is also the chief science officer at genealogy consumer company MyHeritage.
“That’s why it’s so popular. Technology is now highly affordable – a decade ago this was something that only extremely rich people could do,” he told the Thomson Reuters Foundation.
But the trend has raised concerns about data privacy. Those were heightened after U.S. police in April used DNA records held by consumer websites to track down the “Golden State Killer”, an ex-policeman responsible for rapes and killings in the 1970s and 1980s in California.
Investigators finally cracked the case by comparing crime scene DNA to genetic information on commercial genealogy websites that people use to explore their ancestry. The process led to a relative of the killer.
Legal expert Andelka Phillips, who has spent a decade researching genetic privacy, said she was not surprised that DNA information uploaded by consumers could be used for something other than its intended purposes.
“Genetic data can be used for a wide range of secondary purposes, and we might not be able to anticipate all of the ways that this might be used in the future,” said the New Zealand-based researcher.
She said the popularity of consumer genetic services could lead to further privacy issues – for instance, drug or insurance companies could use this data to target consumers.
“People do value privacy differently. But certain things that we use for security, like a bank password, we can change,” said Phillips, research associate for the Centre for Health, Law and Emerging Technologies at Britain’s University of Oxford.
“But once your DNA is sequenced and stored, you can’t change that,” she said.
Since DNA lasts for centuries and holds a vast amount of information about a person and their family, it would be dangerous should that data fall into the wrong hands, MyHeritage’s Erlich said.
“From my fingerprints you wouldn’t know that I’m Jewish. From my DNA, you can learn that I have Jewish heritage,” Erlich said in an interview.
“And of course, in the past, people were killed and murdered because of that,” he said.
If police are able to access DNA databases to investigate serious crimes, as with the Golden State Killer, it is not far-fetched to think that any government agency could use this information to target certain groups or foreigners, he said.
“We’re celebrating catching criminals, but we’re also worried that this thing can be exploited for malicious intent,” said Erlich.
In recent years, governments have increasingly used DNA tests to identify refugees and reunite families who have been separated after fleeing to Europe and North America.
Since refugees might not have identity documents, the U.N. International Organization for Migration (IOM) in Italy said it works with the government to carry out free DNA tests for consenting refugees so they can legally join their family – instead of risking their lives at sea to reach Europe.
Once families are reunited and all the procedures are completed, DNA data is destroyed for privacy reasons, said an IOM spokesman.
Erlich said this use of DNA testing was “incredible for people who have been separated from their families” but not without risk.
“If the government takes this DNA from the refugee … then they can try to identify some family members without their consent,” said Erlich, who is also part of the New York Genome Center.
That could lead to the over-surveillance of certain groups or populations, he added.
The U.S. government has also used DNA tests to reunite families after it separated migrant children from their parents at the U.S.-Mexico border in July, but then backtracked on that policy after public outrage and a court order.
Using DNA, it said, was a faster means of confirming parentage than relying on assembling documents such as birth certificates.
‘WHAT IS IT WORTH?’
Leading genealogy company Ancestry said customer privacy was its highest priority, and said it de-identified, encrypted and segmented data into separate storage platforms.
“Ancestry will not share any information with law enforcement unless compelled to by valid legal process, such as a court order or search warrant,” an Ancestry spokesman said in emailed comments.
23andMe said it would use “all legal measures to resist any and all requests” by law enforcement to access its data. The company added that it would not share information to employers or insurance companies.
For Hailey Engstrand, who was adopted aged four, using a 23andMe kit answered lifelong questions about her ethnicity and health. But the 25-year-old Texan admitted she had some regrets.
“Although I’m really happy that I did this, I’m kicking myself a little bit because I don’t know if I should have given up my DNA,” Engstrand said by phone.
“What is it worth? Is it worth giving up your genetic rights and your DNA rights to know a little bit more about yourself? I don’t know. It’s like most things: the answer is somewhere in the middle.”